Love Some1 with Glut1 fundraising campaign

February 14th, 2016

The annual Love Some1 with Glut1 is underway!  From Valentine’s Day to Rare Disease Day (February 29th), the campaign raises money to support the important and impactful work of the Glut1 Deficiency Foundation and its mission of educating others, increasing awareness of and advocacy for Glut1 Deficiency, providing a forum for sharing support and resources, and helping fund researchers as they work for better treatments and…

New Key Terms Resource

February 10th, 2016

The Education Committee has developed a Key Terms in Glut1 Deficiency resource.  We have compiled the most common medical terms associated with Glut1 Deficiency and provided definitions and video examples of some of the symptoms.  We hope this resource will help patients and families better understand the condition and help those still looking for a diagnosis to find one.  We appreciate the videos families have provided…

Winter 2016 Newsletter

February 6th, 2016

Our latest newsletter has been posted to our website and you can find it at the link below.  Some highlights include news of the upcoming annual Love Some1 with Glut1 campaign, our revamped Research Grant Program, and some newly developed resources we have available. Winter 2016 Newsletter

Research Grant Program

February 4th, 2016

  We are excited to announce our revamped Research Grant Program, which is an important component of our mission of supporting and funding researchers who are working for better understanding, better treatment, and ultimately a cure for Glut1 Deficiency.  Grant funds are available thanks to the donations and support the Foundation receives from family and friends of Glut1 Deficiency patients. Grant award applications for the 2016 cycle will be…

Love Some1 with Glut1 Campaign Sign Up

February 1st, 2016

  Dear G1D Families: Do you wish for… Improved treatments and a cure for your loved one with Glut1 Deficiency? Better support for you and your loved one living with Glut1 Deficiency? More awareness and understanding in the medical and general community about G1D?   The Glut1 Deficiency Foundation is working toward those goals EVERY day!  But it takes financial resources and we can only…

How do families of children with GLUT1 REALLY use dietary therapies?

January 21st, 2016

Results of a large survey   by Eric Kossoff, MD Associate Professor, Neurology and Pediatrics Medical Director, Johns Hopkins Ketogenic Diet Center Suite 2158 – 200 North Wolfe Street Johns Hopkins Hospital Baltimore, Maryland 21287 Phone (410) 955-4259    Email: ekossoff@jhmi.edu   In July 2013, I had the honor of speaking at the Glut1 Deficiency Foundation annual meeting for parents and caregivers in Houston, Texas.  I…

Norwegian Glut1 Deficiency association

December 10th, 2015

We are excited to learn about a parent organization for Glut1 Deficiency in Norway!  Please visit the website for more information.

Fall Newsletter

November 24th, 2015

Our fall edition of our quarterly newsletter has been posted to our website and you may find it here.  

Help Some1 with Glut1 stories

November 24th, 2015

April and Allen York collected and shared some very touching Glut1 Deficiency patient stories on their facebook page in the weeks leading up to their Help Some1 with Glut1 fundraiser in November.  We have compiled the stories and shared them here in the hopes that they will be encouraging and educational.   You may find the stories at the link below. Help Some1 with Glut1…

New Blog in Spanish

November 2nd, 2015

We are excited to share a new resource for the Spanish-speaking community – a blog by Glut1 Deficiency mom Vivian Mathis.  She hopes to help raise awareness and educate through her efforts and provide translations for some of the resources from the Foundation. Glut1Mom.com